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Navigating the Storm

By Adrienne, on July 23rd, 2010

Advice? I’ve had my fill of the stuff. We parents of kids with emotional and behavioral differences are like advice repositories, the place where people dump all their fears and their conviction that anything (everything!) can be cured with a simple twist of behavior or diet.

In general? I don’t like advice.

However, there are some some suggestions and nuggets of wisdom that would have eased my journey had I learned them earlier in this process. Most of this is applicable whether your child has a diagnosis or not and no matter how severe your child’s issues are. Please share your own suggestions in the comments!

Be confident when dealing with medical professionals.

This is one of several suggestions that boils down to this: be assertive. For most people, being assertive with doctors and other medical professionals is very difficult because we view them as authority figures.

They are not.

Again: doctors and medical professionals have no authority over you.

They are expert consultants, but you (When I say “you” I mean one or both parents or the person who has the power to make decisions for the child.) are the ultimate authority on everything having to do with your child.

I struggled mightily with this in Carter’s first few years and let several doctors treat me poorly over and over again before I got wise and changed doctors. Of course, this is a much bigger challenge in smaller communities where there are few doctors to choose from, or if your child requires highly specialized care from the only XYZ specialist in the area, but nobody deserves to be abused. You don’t have to tolerate condescension, bullying, or a dismissive attitude. The best doctor/parent relationships are based on a mutual commitment to providing the best possible care for the child. You have to work together. Make sure your child’s doctors know that you expect nothing less.

Generalize the last bit of advice to apply to education professionals.

Research the laws about CPS in your state, just in case.

Speaking of authority, there are many reasons why safe and caring parents of a child with behavioral and emotional issues might open the door to find a representative of child protective services on the doorstep. If the neighbors hear full-blown rages; if people in the grocery store witness you restraining your child; if a bipolar child in the height of a manic phase talks in public or at school about sex in age-inappropriate ways; or a thousand other possibilities, someone may make a phone call.

It probably won’t happen to you. We’ve never had a CPS visit to our house, but it could happen. I’ve heard too many stories to assume that it won’t. In the past few years, I’ve learned that in the midst of a crisis is a terrible time to try to learn something new, so do it now. Spend an hour learning your rights should that knock on the door ever come.

Be prepared for the jerks.

You’re going to meet some.

Why? I don’t know. People are angry, and you and I, with our flapping, screaming, twirling, rocking, talking, singing, tantruming, violent, intrusive children are just the whipping post that some of those angry people are hoping to find. (Not really; no one is out there looking for parents to abuse. I do think, though, that some people find us very convenient place to unload some of their rage.)

Let’s face it: a sizable portion of the population believes that autism, ADHD, SPD, pediatric mental illness, and all the rest of the possible causes for unusual behavior don’t exist. To the people with this mindset, we are excuse makers who could make our children behave if we would just discipline them right.

I’ve been through three phases with this. At first, I was defensive. I wanted to explain to everyone who made a snide comment to me that I had three older children, all of them just fine. I wanted them to believe and understand that I wasn’t doing something wrong to cause him to act the way he did.

I’ll just tell you now: that doesn’t work. We’re the excuse makers, remember? These people have made up their minds about us. It’s going to take more than a brief encounter to change their beliefs.

Then I got angry. White hot furious. How dare those people presume they knew anything about me or my child? I jumped asses all over town trying to force people to understand that this was real. “Would you speak this way to a mother whose child has leukemia?” I hissed. “I bet if you saw a kid who was bald from chemotherapy you’d tell his mom she got him a crappy haircut, right? You’re that asshole, aren’t you?”

One word: exhausting.

Some other words: Carter heard all of that.

Now? I have a magic phrase. I have it ready for all the people who use words like brat, and control your kid, and what the hell is wrong with him and this isn’t a playground, you know!

My magic phrase is this: You have no idea what you’re talking about.

No muss. No fuss. I don’t get all worked up, Carter doesn’t see me getting all worked up, and since people expect me to push back, their surprise knocks them off course.

Get a magic phrase. You can use mine if you want, or make your own, but have it ready!

Grieve.

Oh, this is a hard one. It’s gotten harder because of the very vocal movement that says neurological differences are just that: differences. They aren’t problems; they are identity.

While I applaud and support a movement toward broader acceptance, feelings are feelings. Whatever your opinion on the matter, few people expect to have a child with emotional and behavioral differences and you may need to grieve the child you thought you would have.

I had to grieve many things. I had to grieve the lovely, cozy experience of mothering a baby that I had enjoyed with my older kids. I had to grieve time to myself and time alone with my husband. I’ve had to grieve after every diagnosis, from motor delays to sensory issues to cognitive challenges. I’ve grieved the relationships I once shared with my older kids. I’ve grieved my expectation that one day, Brian and I would enjoy some empty nest years. I’ve grieved the dream of financial security, the social life I used to enjoy, and holding a regular job.

Most of all, I’ve grieved for the lost hope that my little boy would have a joyful childhood.

There have been other feelings. Darker feelings. We do ourselves no favors when we deny them. I begged Brian to let me put Carter in foster care; I have believed that Carter hated me and I have sometimes hated him. I have wished many times that, on the night when we conceived Carter, I had turned over and gone to sleep instead of having sex that second time.

But those are feelings, thoughts, and wishes. Thinking about throwing the baby through the window (a nearly universal fantasy among mothers of very high-needs babies, by the way) is not the same as actually throwing the baby through the window. Feelings are part of being human. Assuming there’s no underlying pathology, we can control the actions we take as a response to our feelings, but there’s no advantage to trying to control the feelings themselves. When I acknowledge to myself that I am very angry, I’m far less likely to go around smashing coffee cups and making a mess of things.

Because you know what? People are going to tell you that you’re strong. They’ll say you’re special, extraordinary, a hero. They’ll even call you an angel.

It’s OK that you’re not. Raising a child with emotional and behavioral challenges is wickedly difficult. You don’t have to do it with grace, finesse, or style. (There are no points for any of that, in case you hadn’t heard.) You just have to show up and do it.

It’s OK to let people see your white flag.

Do your own research. But not too much. And choose your sources carefully!

The fact is, you might have to be your child’s case manager. Medicine is highly specialized now and when we were hunting for a diagnosis, no one doctor knew (or cared to know) the whole story. Each doctor had a few pieces of the Carter puzzle and I was the only one looking at the big picture. I drew the lines. I asked for appropriate referrals.

Know what’s infuriating? When you are researching and studying and never sleeping, and you decide, “Hey, we need to see a geneticist!” But no one has ever said a word about seeing a geneticist, so you go to the pediatrician and ask for the referral and he rolls his eyes but gives it to you so you’ll go away. You’re finally in the presence of said geneticist and he looks at the chart and takes the history and scolds you, saying, “Why didn’t you bring him in before this? He should have been here at least three years ago!”

Love that.

However, don’t research too much or get preoccupied with it because as important as all of that is? Job one is to be a great and loving parent to your child. I occasionally lost track of that and my whole family, including Carter, suffered for it.

Finally, choose wisely. We all know this; the internet is quackery central. What we don’t all know is that it’s not always easy to tell what’s quackery and what’s not. (Conveniently, and not surprisingly, there’s a website that can help you decide.) Nothing brings out the charlatans and snake-oil salesmen like emotional and behavioral issues in children. Keep an open mind; alternative medicine has much to offer, but be critical and cautious. Know, too, that there is no magic diet, formula, potion, or pill that can make it all go away. I know that’s lousy, but better to grieve and accept than to keep chasing something that doesn’t exist.

Know that the mental healthcare system is terribly inadequate.

I wasted a great deal of time and even more energy struggling against this sad reality. It’s unfair. It’s wrong, It’s criminal.

Yes yes yes. It is. It’s all that and more. Worse. Just when I think I’ve heard the worst possible story or run into the hardest, highest possible brick wall?

More.

I remain flabbergasted. The horror of it all is… I’ve been staring at the screen for several minutes, trying to find words for it. There are none. You and your child are very unlikely to receive all the help that you need.

But I’ve come to some level of acceptance. Not the kind of acceptance that says it’s OK. It most definitely is not. But the kind of acceptance that says this is what it is and I have to live my life anyway has allowed me to let go of some of my rage. I’ll keep calling out the system, advocating for kids (and people of all ages) who need help to live satisfying and productive lives, and trying to raise awareness.

But we have to live. For today, right now, it is what it is. Tying myself in knots wasn’t changing the system, but it was making me bitter.

If you are unwilling to reach for acceptance than I’d like to suggest that you buy a helmet. If you can’t find the line between “advocating” and “beating your head against a damn wall,” you’re going to get hurt.

Take care of yourself and/or your relationship.

So here’s a difficult reality: parents of kids with special needs need more opportunities to take care of our own needs. Why? Because the parenting we do is more challenging in every way: mentally, emotionally, physically, and spiritually. An hour with Carter requires much more of me than an hour with any of my other kids at the same age. Much more. Exponentially more.

But parents of kids with special needs actually get far fewer opportunities for self-care, and by that I mean anything a person needs to keep him or herself healthy: time to socialize with other adults; time alone or with one’s partner; exercise; even basic hygiene and grooming can be challenging.

I don’t know the solution for this; I’ve never talked with a parent who has a child (or two, or more) with special needs who didn’t struggle to find ways to meet his or her own needs and the needs of a marriage or other primary relationship in the midst of it all. The key here is, know that this matters (If we, the parents, are crumbling due to stress, how will we meet our children’s needs?), and it’s OK to be creative. Traditional methods for getting time away might not work.

We can’t hire teenage babysitters for Carter. He’s too volatile. I have, however, hired my own teenagers to take care of him while I am here. I can do my own thing, but I’m still immediately available in case of an emergency. Lots of families say this mother’s helper sort of arrangement can work. Explore respite care, or do a babysitting swap with another family whose child has similar issues.

Find a community.

This is important: find a group of other parents whose children also have emotional and behavioral challenges.

There’s no possible way I can overstate this. No hyperbole: when Brian and I found our real-life support group, our lives changed dramatically. Remember the Swamp of Sadness in that old movie, The Neverending Story? That’s what we were like before we found our support group, all slogging and sad and despairing. Now? We have a place to go once a week where we know we won’t feel weird or awkward or out-of-place. If someone walks into that room on a Saturday morning and says, “Wow, we had a terrible week,” we know that doesn’t mean the car broke down or the boss was in a bad mood. We’re all calibrated to the same frequency and when one of us says bad week, we don’t have to explain that it’s not about any of the ordinary ups-and-downs of life.

We found our group on a fluke. I was in the waiting room while Carter was in with his therapist. I was all caught up in my own world, listening to my iPod and reading a book when the woman two chairs down asked what I was reading. We got to talking, and then she invited me to a little support group that she’d started, and eventually we went. Thank God we did.

We’ve learned from our support group which doctors listen and which are pompous. We know where to go in an emergency and what to ask for when we get there. We’ve shared some of the lessons that we’ve learned. We have friends we can call if the shit hits the fan and we know that if any of them need to, they’ll call us.

That’s called a family.

Brass tacks? The system of care for kids with behavioral and emotional challenges has huge holes in it. Woefully inadequate isn’t strong enough. Criminally negligent comes closer. That’s the reality, and while we work to change that system, we have to help each other. None of us can do this on our own.

If you can’t find a support group, make one. Troll the waiting rooms. You’re in them all the time anyway, right? Might as well use them for recruitment purposes.

Make an online community, too, but that part is easier. And I can’t come hold your hand at 4 am if you live in Buffalo or Boulder. You need some people who can.

Laugh.

Laugh hard. Laugh often. Make jokes and tell stories. Tickle. Play games. Have races while wearing feather boas and swim flippers. Make faces. Throw water balloons. Have burping contests.

Let your kids join in sometimes.

Whatever it takes, whatever amuses your family, do that until your sides ache and you need to change your drawers because you peed a little.

What else?

This isn’t exhaustive (in spite of its length). Leave me a comment and tell us what you wish you had known.

32 comments to Navigating the Storm

That’s one of my favs. And I don’t mean just with your special needs child (but that too). But also with well-meaning (or not so well-meaning) friends, family, strangers, all of whom think they have some gem of wisdom about how to handle your child. Just nod your head and say, “good idea.” when you walk away you can roll your eyes.

I know that I’m not dealing with the mental illness or emotional challenges of a child, but so much of this advice is applicable to ALL people suffering with mental illness. So much of what you’ve written is advice I wish I’d had a year ago when my downward spiral to PPD began. While I know my illness is temporary, this advice would’ve made it more bearable in the interim, you know?

And regarding medical professionals, I wish they’d remember that they work FOR and are employed BY their patients. It’s not the other way around. We pay them for advice and medical guidance. They do not become gods when they graduate from medical school and they are not better than the general population. A little kindness and respect on the part of doctors would go a long way toward restoring people’s faith in the medical community.

I feel like “knowing” you from twitter & your blog helps me remember that the people, families etc that I deal with are real people. That no matter how worn out, over worked, etc I may feel the compassion still needs to come through in my work. Talking to the wonderful family members like you helps me stay hopeful in people. The Carters of the world deserve love and care. I can’t say enough for the helpful self education.

That makes me so happy! I just wish the system was more sensitive to providers. If it was, it would be easier for the providers to be sensitive to patients and families. In the meantime, I’m grateful that so many like you are so caring in spite of exhaustion and too-large workloads!

Wow, would it be wrong to say this post was a breath of fresh air? Perhaps, because it is nice to hear someone say so eloquently what I try to say all of the time. To know I’m not alone in the way I feel. Thank you!

This was a beautiful post, and this is only the first one I’ve read! I am excited to peruse your blog a little more. I can understand why you are not a fan of advice. I am also not one to listen to unsolicited advice (which are often little more than opinions), particularly when it comes to parenting. I like to listen to my intuition.

That being sad, I am also slightly obsessed with gathering pearls of wisdom whenever I can. To me, there is a difference between unsolicited advice/opinions and general wisdom about life, love, happiness from people who have learned a thing or two while on this earth. And your post is FULL of wisdom. Every Wednesday, I write a “Wednesday’s Words of Wisdom” post. I may just quote YOU this week!

My oldest daughter is 7 and was diagnosed as bi-polar last month. Our middle child had a stroke three years ago. Life is crazy and chaotic. I echo every single thing you said. You write it much better than I’m able to though.

[…] strength and wisdom. She shared some of these lessons with her blog readers in a recent post, Navigating the Storm. Please go visit Adrienne at No Points for Style and read the entire post. Each lesson is worth […]

This was my life 14 yrs ago. My child was the medical mystery. Your summation is so valuable.
The support was something I ignored. I had friends. But the few support groups I tried early on were not right. So I stopped. My friends and family just could not understand to be help.

If I could add to this great post, keep searching until you find your support. You need it. You need it every day. And you need it as your BD, PDD, BPD, SPD child enters the teen years.
A job change moved us away from family and friends and to a small town as my child turned 14. Our lives spun out of control. Having that online support made all the difference in navigating the health care options, avoiding demigods in medicine and help believing it could get better.
Some support lead me to new studies and trends in treating psychosis. Which led the ped. psych to believe my concerns. It helped me to appear as an informed patient advocate, vs another over anxious mom. btw- I’ve run into this every step of the way with my child’s treatment.
With the right treatment it can get better.

I have chronic Lyme disease and my oldest son (10) was diagnosed ADHD, ODD, and Mood Disorder NOS. Just reading this post on your blog has made me feel better. People who only have “normal” children have no concept of how difficult life is for me. I have not fully grieved yet. I have asked around about support groups and there do not seem to be any so I may have to start one. I am also still in the “What have I done to deserve this daily living hell!?!?!?!” stage. I eagerly look forward to reading more of your blog and feel so grateful that I am not alone in my thoughts or experiences!

I discovered this blog today, and there are so many things I could say, in addition to “Yes!” But what I wanted to mention is what I guess has been my version of “no points for style.” (My apologies if I should have put this comment elsewhere.)
I screamed my way through a premature labor — too early in the pregnancy to have taken the labor class and no pain meds allowed for a premature birth. (The baby died shortly after birth, and I have to say that at least I didn’t have to wonder if meds contributed to that.) As I have attempted to be a widowed parent to two (adopted) children who have struggled mightily since their father’s death, I have thought that I feel as though sometimes I get through it by metaphorically screaming my way through it, like that painful labor. Someone I go to occasionally for guidance uses the metaphor of birthing for why I am finding my situation so hard, and that acknowledgement that it is that painful, and that just getting through it is enough, helps me a lot.Diana recently posted..Curio cabinet